Isolated aortitis

Hello all, I had my second or third appointment with my consultant rheumatologist, after waiting over a year. I was unaware that he should have seen me earlier. I have been seeing rheumatology nurse specialists during that year. My inflammatory markers remain raised, at 13-19 for crp, a lot better than December 2015, when they were 210. I've persistently asked the nurse specialists why my crp levels have not returned to normal and have been fobbed off, repeatedly, them saying that my crp levels may never have been normal and reassuring me that my blood tests are fine, and that things take time. At my last appointment with the nurse specialist, I asked why I hadn't been sent an appointment to see the consultant for over a year and she said she didn't know. She checked her computer and asked if I could attend in March and I said yes. 2 weeks or so later, I received nothing, so I rang my consultants secretary who said that no appointment had been made. She made me an appointment for 6 weeks time and I saw him eventually. To cut a long story short, he said that there may still be some inflammation present and I am scheduled to have a PET scan and an echocardiogram for persistent breathlessness and tachycardia. He has also consulted with the vasculitis team at Freeman hospital, Newcastle to further discuss. It's looking likely that my mycophenolate will be increased, but I can't help feeling, that this could have been dealt with months ago. I think it highlights the apparent lack of knowledge in a lot of health professionals, in relation to vasculitis. I'm off my soap box now 😁 xl

6 Replies

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  • Time for a PALS complaint. Their procedures are messed up and they need to be aware of it. Because one day it will REALLY matter and someone could be desperately ill or even die as a result.

  • Hi pmrpro....I was thinking of mentioning it to my consultant, when I see him again...there's one particular nurse, who I dislike, and I hate even saying that, but she is very blase, it took her MONTHS to submit an OT referral for me, within her own team, an lied repeatedly saying she would follow it up...then the OT rang me to make an appt an she said she only received the referral within last 2 days...not only that, the OT told me that I could have self-referred. I'm not keen on complaining, because I have to continue seeing these people, but I have lost confidence in them. And you are right, someone will die...vasculitis is potentially fatal.

  • You know you can edit? Click on the right hand box with the downward pointing arrow - edit/delete/report!

    Like Keyes - I would also be asking why you haven't had closer monitoring by a doctor. There are places for specialist rheumatology nurses but I don't feel it is a good idea in rare vasculitic diseases. Even the doctors struggle.

    And she needs a good talking to (or more) - that is absolutely not acceptable behaviour.

  • I would be asking why you were ever referred to the Nurse specialists for ongoing management.

    There aren't many Rheumy nurses etc who have the training and experience to manage Vasculitis, I would be interested to find out if they have actually had specialist training. Part of the NMC code of conduct for nurses is that they don't take on roles they aren't qualified for. Usually it's only nurse specialists at the very large multi disciplinary Vasculitis clinics that take on such a role.

  • Hi Keyes, my honest answer to that, is I do not know, but being an ex-nurse myself, I pick up on these things quite quickly, especially when they don't appear to know anything..and when you feel ill, and get stock answers like "we don't know", it doesn't help matters

  • There are about 4 specialist nurses that I know about, one of them said to me she had only ever seen 1 case of vasculitis before me, in 15 years and yes, you are right about the NMC code of practice. I get the impression, that they deal with a large number of people with rheumatoid arthritis, and I say that, because all of the healthcare assistants who take my blood assume this....so when I tell them what I have, their faces go blank...so I'm compelled to then say, that it's quite rare...lol

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